Need Your Input For Caregiver

Mb731

Flakey_Flake said:

Wifeforlife
Hi Wife,

Hmmm ... no one has told me that radiation is the big fighter here. That is kind of what John (bf) has been thinking, but no one ever has confirmed it. I feel for him because the throat is a much more difficult area to have radiation. My poor breast at least is pretty much an unused area. Thanks for you input, and I will continue reading the posts on this board. I also have learned alot from those who have posted to my thread. For a place no one really wants to go to, I am finding these boards vital to what life has dealt me, and I am grateful they are here. Thanks Wifeforlife.

Sharon

HI Sharon
Well when my husband was down and out and thought that he couldn't go on, the radiation oncology nurse told him that of all the cancers they treat, head and neck is one of the worse due to the side effects. It is a double edge sword taking this break from radiation because he is so burned...he needs the break but then it prolongs the treatment. I just want this to be over for him. It is very hard seeing him just wanting to swallow a glass of water.

We are hanging in.
thanks all,
Marybeth

Hal61

Flakey_Flake said:

Hi Glenna
Hi Glenna,

You had a double whammy, huh! It sounds like you tolerated the treatments quite well. And had good results. That is very encouraging. I am sure my boyfriend will be pretty wiped out by treatment, and expect that. Hopefully he can get something down his throat to keep going on. I guess that is my big concern. Even if we find side effects at their worst, it is definately worth going through. There is always the comfort of knowing that it won't last any longer than seven weeks. BTW, the dog you have pictured looks just like one my boyfriends dogs, except his "Snuffles" has a pink nose. And a personality that just won't quit.

Thanks for your story Glenna. I will stay strong in Jesus, and fight to the end!

PEG, food, and adhesive tape
Hello FF, I'm about the same age as your boyfriend but run closer to Woody Allen than Charles Bronson. I bring this up in connection with the PEG tube. Because I don't take pain well--I'll take what pain I can't avoid, but only that. Due to the advice on this board I got my tube in two days before I started my run of 35 rads and 3 Cisplaten chemos. Base of tongue cancer with spread to two lymph nodes, same side.

Two problems with not having a tube: 1. It starts to get painful to the point you simply can't eat without one; 2. Once the taste buds stop working, the stuff you're trying to force down tastes like bad-tasting goo, regardless of what it is. Many thoughtful people have gone to great lengths to create smoothies and shakes that combine the calories and nutrition of a Christmas turkey in a velvet smooth drink, only to find they or the person under their care just can't get it down.

My peg tube is very little trouble. First week of having it I would dress the area around it with gauze pad, and tape or cloth adhesive tape, then secure it to my torso with basic medical adhesive tape. After a short time my torso began to resemble a long negelected hiway billboard, with remnants of the standard tape creating a criss-crossed jumble of the securing adhesive. At that point I bought an extra-wide 4" roll of elastic Ace bandage. I measured a length that would snug itself around my torso just below my ribs, cut it, then folded it in half length wise. To finish I used two safty pins to attach the two ends. I still use the cloth tape and standard gauze pads to dress my PEG entry point, but simply lay the tube in the open-topped "pouch" I wear to make securing the tube and fitting easy--and none of the tough adhesive residue. Sounds like you are asking good questions and getting the answers. My toughts are with you and your tough guy.

Hal

D Lewis

Hal61 said:

PEG, food, and adhesive tape
Hello FF, I'm about the same age as your boyfriend but run closer to Woody Allen than Charles Bronson. I bring this up in connection with the PEG tube. Because I don't take pain well--I'll take what pain I can't avoid, but only that. Due to the advice on this board I got my tube in two days before I started my run of 35 rads and 3 Cisplaten chemos. Base of tongue cancer with spread to two lymph nodes, same side.

Two problems with not having a tube: 1. It starts to get painful to the point you simply can't eat without one; 2. Once the taste buds stop working, the stuff you're trying to force down tastes like bad-tasting goo, regardless of what it is. Many thoughtful people have gone to great lengths to create smoothies and shakes that combine the calories and nutrition of a Christmas turkey in a velvet smooth drink, only to find they or the person under their care just can't get it down.

My peg tube is very little trouble. First week of having it I would dress the area around it with gauze pad, and tape or cloth adhesive tape, then secure it to my torso with basic medical adhesive tape. After a short time my torso began to resemble a long negelected hiway billboard, with remnants of the standard tape creating a criss-crossed jumble of the securing adhesive. At that point I bought an extra-wide 4" roll of elastic Ace bandage. I measured a length that would snug itself around my torso just below my ribs, cut it, then folded it in half length wise. To finish I used two safty pins to attach the two ends. I still use the cloth tape and standard gauze pads to dress my PEG entry point, but simply lay the tube in the open-topped "pouch" I wear to make securing the tube and fitting easy--and none of the tough adhesive residue. Sounds like you are asking good questions and getting the answers. My toughts are with you and your tough guy.

Hal

Nice level of detail there, Hal
Hal

Nice level of detail on securing the PEG. My gastro doc (a woman) recommended I simply tuck it under my bra, an option not available to you.

Deb